Baclofen pump FAQ

[sjean423]

Forgot that, it might be an issue ..... that would be 3 things then.

[quad79]

Forgot that, it might be an issue ..... that would be 3 things then.

Two bags....just belly art.:high5:

[grace's mom]

I took my daughter in for her refill on her pump the other day and when they removed the old medicine, it should have been 9cc that was taken out but only 5 cc were actually removed. Then as we filled it back up there were 5 cc of medicine that would not go in. My Nurse said she had never had that happen before and called the Dr. The answer was .... let's see what happens on the next fill up ( 6 months from now ) has anyone else ever have this happen? Seems like I am a bit more concerned about this than the Dr.

[rdf]

I got a new pump and a catheter revision both yesterday afternoon. This is the fourth time in just a couple of years for the catheter. This time, surgeon said I'd somehow yanked the catheter down so that it was barely in the spinal canal. The times before, the connector broke, the catheter became dislodged, and the other time, it cracked.

Right now, the pump is working perfectly, first time in a long time. Knock on wood. He said this time not to do pretty much anything for 6 weeks, just to be sure. He doesn't even want me bending over in my chair unless absolutely necessary. I must also wear a binder 24/7, except for the shower.

I feel like a limp noodle, and it's set on what it was for over a decade. I'll need to play with dialing it in, problem is the closest doc is 100 miles over old two lane Iowa roads, for the most part. But this doctor finally listens to EVERY thing I say about the pump. I've proven him wrong and myself right every time, so he said he'll listen to me and go with what I say in the future. I thought that was nice of him.

Good luck to all who have a pump or are considering one. I just got home from driving from the hospital 100 miles away. I'm whipped. As usual, the nurses couldn't get a needle into my veins. EIGHT times it took them. I don't mind much or get upset about much in this world, but I am kind of getting upset at the inability of nurses to stick a needle in my veins. They start crying, for Christ's sake, at least a couple of the young ones did. I didn't yell at them, they just felt bad.

I'm sick of surgery. Knock on wood.

[rdf]

I'd call Medtronics, and ask a rep, Grace's mom. I've heard of discrepancies before, but can't remember the amount of difference. I know what they pull out of mine is often not exactly what they'd figured it to be. Best of luck to your daughter.I took my daughter in for her refill on her pump the other day and when they removed the old medicine, it should have been 9cc that was taken out but only 5 cc were actually removed. Then as we filled it back up there were 5 cc of medicine that would not go in. My Nurse said she had never had that happen before and called the Dr. The answer was .... let's see what happens on the next fill up ( 6 months from now ) has anyone else ever have this happen? Seems like I am a bit more concerned about this than the Dr.

[quad79]

I've been pc-less for awhile..sorry it's late, but glad things went good rdf. Hope it continues.

[wadei]

I have an appointment with my Dr to try the baclofen pump. But I’m afraid to loss the control off the B&B and the sexually. I’m T6;T7 incomplete. I have spasticity and leg stiffness I have been using the baclofen for more than 2 years 80mg a day but It doesn’t work for me. I can’t walk for long distance because of the legs stiffness I can’t bend my knee.

[rybread]

Once you get it put in, they can adjust the amount you get at any given time in the day so you can get more at night or during the day so whenever your legs stiffness or spasms are worse, you can get it for that time in as little amount as you need so hopefully that way they will not interfere with your walking. Good luck with it. It's really saved my life.

[maggie~mae]

I had my ITB trial in the beginning of this month. Not gonna lie, it hurt like hell - not to mention the horrible spinal headache I got afterward. The PTs could tell within hours that the trial worked. I had the pump implanted two days after the trial. Recovery was tough for me - spent 5 days in the hospital where I had the surgery, then was transferred to a rehab hospital where I've been for almost 3 weeks now.

So far I love the pump. I'm able to do a lot more without all of the tone and spasticity I had on oral baclofen. Walking is a lot easier, but I've had to relearn how to walk w/out the spasms. Still trying to fine-tune the dose on the pump, but it's getting there!

[manouli]

Using Intrathecal Baclofen for Spasticity Treatment after Spinal Cord Injury
by Claire Smith on 3:03 pm in Spine


Dr Jacques du Plessis

There is always a latent period after spinal cord injury before the onset of spasticity, which indicates the end of spinal shock. Mild to moderate spasticity is common after spinal cord injury and normally does not need treatment. Treatment is only considered if the spasms affect the patient’s quality of life. When this occurs, it interferes with transfers and sleep, causes pain and increases the risk of pressure sores.

On clinical examination, there is an increase of passive resistance of movement of the affected limbs and the reflexes are sometimes, but not always, increased. Contractures develop and the patient gets a fixed posture. Spasms may mask any retained voluntary motor function.

Diagnostic evaluation

Common causes of spasticity such as pressure sores, an anal fissure, ingrown toe nails and a progressive spinal deformity resulting in spinal cord compression should be ruled out. The patient should be neurologically examined and this should be compared with the result of previous examinations to rule out an ascending spinal cord lesion, which sometimes occurs in syringomyelia, which could also be responsible for the spasticity.

The patient should be assessed by a urologist to rule out bladder stones, an upper- or lower urinary tract infection and other pathology of the renal tract that can cause an increase in spasticity.

A magnetic resonance imaging scan of the area of injury should be done to rule out the possibility of syringomyelia or spinal cord compression caused by a progressive spinal deformity, disc herniation or spinal stenosis above the level of injury, especially when a spinal fusion has been previously performed.

Medical management


read....

http://www.medicalchronicle.co.za/using-intrathecal-baclofen-for-spasticity-treatment-after-spinal-cord-injury/

[GGabrielle]

I got my baclofen pump placed in september 2010. It has helped my independence, comfort and life generally. It's also fun to freak people out with this huge hockey puck under my skin. In December I got fluid collecting around the catheter site at L1-2. The surgeon said it was fine (some scarring must have gotten loose to let some CSF out) unless it started to leak and that it would go away soon. The amount of fluid fluctuates during the day as well. I had a spinal headache but no leaking. The doc is puzzled because the fluid pocket is still there, but the pump is working and I haven't had any other problems. He has assured me that it's okay. Has anyone else experienced this?

[teetem]

How I wish I'd found this forum a year or so ago!! My son Michael (now 30) was critically injured in a car crash almost 4 years ago(his friend fell asleep at the wheel). He sustained numerous broken bones on his right side, and 5 separate and distinct brain injuries. He was in a coma for a month, and we didn't know if he'd survive - and if he did, if he'd know us, or be able to speak, or see, etc, etc. Thankfully, after a number of medical facilities (and a horrific 18 month stint in a local nursing home) he's at home with us, and I'm his fulltime caregiver.

Michael is on a long list of medications, for various issues - Pain, depression, neuropathy, high cholesterol, and he was on insulin and medformin for diabetes (which developed about a year ago). The diabetes is now under control, so he's off those meds.

He had the baclofen pump put in a year ago, at the suggestion of his pain management doctor. How I wish I'd gotten the information on this site before making that decision!! His trial went well, so the pump was put in. He has increases in the amount dispensed every month, but to be honest, I really don't see any improvement in either his pain level or his spasticity. His legs are both bent at the knee (permanent sitting position) although he is able to straighten his left leg somewhat. His right leg, though, that sustained the major injuries in the crash, causes him a LOT of pain, and the knee is very misshapen and painful. He has a titanium rod from his knee to his hip. When we mentioned the misshapen knee to the pain management dr, he suggested we see an orthopedic surgeon in town - who recommended amputation at the knee (an option Michael himself had requested about 2 years ago, and he was told that wasn't an option). Michael and I came home and researched amputation, the pros and cons, and spoke to a friend of his who had his arm amputated in Iraq, and who now deals with soldiers who come home with missing body parts. He said that voluntary amputation rarely, if ever, causes phantom pain... So we told the ortho dr that's what we decided to do, and he referred us to a dr that works from a hospital we'd prefer going to (our local hospital is atrocious!!).

The more time that goes on, with there seeming to be no improvement and increasing pain, the more I'm questioning the baclofen pump. Michael has lately been saying his right side hurts (where the pump is located) and he has pain in his lower back (where the tube is directed). Going for the amputation would mean the pain he experiences every day would be gone (hopefully meaning he could decrease or discontinue his percocet), and he probably wouldn't need the baclofen pump.

Is the surgery to have it removed the same as having it installed?? I'm thinking it would be better to remove it before the amputation surgery - any opinions on that?

Sorry this is so long - I'm just so thrilled to have a place to get information from!!

[SCI-Nurse]

Yes the surgery is basically the same to remove.What dose is he on? Does he have a rehab doctor giving input? The dose can be increased by 5-20% every other day, or atleast every week. And physical therapy during this. Once a month sounds very slow. Until the correct dose is achieved or the max dose. If the medication doesn't seem to help the spasticity at all then studies need to be done to make sure everythign is ok. Spasticity can be one cause of pain but there may be others.
Is there a rehab doctor who specializes or is very knowledgeabe in spasticity in your area?I highly recommend you consult one.
Our anesthesiologists puts the pump in but doesn't manage the dose. I strongy recommend you consult a specialist for this and the pain issue. You need a physiatrist or rehab doctor.
CWO

[brentcarpenter82]

Very interested in the Bac-Pump and spasms...Could someone send me a message telling me how to post a new discussion! I dont know why I can not figure this out?

[rdf]

Go back to the main CARE (http://sci.rutgers.edu/forum/forumdisplay.php?f=15)forum page, the one that lists all the different discussions. Look to the top and left of the list of discussions. There's a button there called http://sci.rutgers.edu/forum/images/buttons/newthread.gif

Click it and go. Good luck.
Very interested in the Bac-Pump and spasms...Could someone send me a message telling me how to post a new discussion! I dont know why I can not figure this out?

[northpond]

Baclofen pump facts
The baclofen pump is used to provide medication directly to the spinal cord, typically baclofen, when the oral dose exceeds the recommended maximum dosage. It is produced by Medtronic and is about the size of a hockey puck. A catheter runs from the pump along the abdominal wall where it is anchored to the spine and punctures the spinal cord. It is possible for the catheter to be placed above the point of injury. I have mine placed at C-4. It can provide medication both continuously or in bolus amounts (large amount at a time) and is typically delivered in micrograms. The pump itself is located just below the skin somewhere in the abominable section. Mine is located on my right side. The battery lasts anywhere from five to seven years at such a point when they need to replace it, but not the catheter. To fill the pump, a needle gets stuck through the skin and a port in the middle of the pump. To reprogram it, a scanner is placed directly over the pump to scan the pump and get the settings at which point they can change them and program the new settings into the pump. MRI's are not a problem with it as it automatically shuts down as soon as it senses the magnetic field. If anyone has any information to add to this, go for it.
As far as medications that can go in it, baclofen and clonidine are a typical mix to help with spasms and some pain. You can add Dilaudid or a number of other liquid medications although I found they aren't very effective for central pain, at least not long-term. And for me, a lowered my testosterone level and I put on a ton of weight.
I have a lot of experience with this thing so if you have any questions that aren't answered here by me or others or doing a search, feel free to ask.

Will someone please make this a sticky post. There are a lot of questions about it and I think it would be good to have them all answered in one place.

thanks for posting. I am thinking of having a pump installed. Did it help with walking and bending at the joints. man my right leg and trunk is so stiff - crazy. Did the pump make you gain weight?? I take 80 mg orally and see some weigght gain and pot belly as well. Let me know how it's going. I am one year post from tumor surgery in spinal cord t3-t5

[maria2301]

I had my baclofen removed a year ago forgetting why I got it to begin with. Horrible mistake removing it. Now after a year I was to reinsert it again. will there be any complications. I feel useless my spasms are so bad I cant even cath my self anymore.
Baclofen pump facts
The baclofen pump is used to provide medication directly to the spinal cord, typically baclofen, when the oral dose exceeds the recommended maximum dosage. It is produced by Medtronic and is about the size of a hockey puck. A catheter runs from the pump along the abdominal wall where it is anchored to the spine and punctures the spinal cord. It is possible for the catheter to be placed above the point of injury. I have mine placed at C-4. It can provide medication both continuously or in bolus amounts (large amount at a time) and is typically delivered in micrograms. The pump itself is located just below the skin somewhere in the abominable section. Mine is located on my right side. The battery lasts anywhere from five to seven years at such a point when they need to replace it, but not the catheter. To fill the pump, a needle gets stuck through the skin and a port in the middle of the pump. To reprogram it, a scanner is placed directly over the pump to scan the pump and get the settings at which point they can change them and program the new settings into the pump. MRI's are not a problem with it as it automatically shuts down as soon as it senses the magnetic field. If anyone has any information to add to this, go for it.
As far as medications that can go in it, baclofen and clonidine are a typical mix to help with spasms and some pain. You can add Dilaudid or a number of other liquid medications although I found they aren't very effective for central pain, at least not long-term. And for me, a lowered my testosterone level and I put on a ton of weight.
I have a lot of experience with this thing so if you have any questions that aren't answered here by me or others or doing a search, feel free to ask.

Will someone please make this a sticky post. There are a lot of questions about it and I think it would be good to have them all answered in one place.

[zevobru]

My son is having his pump removed in a couple weeks. He had all kinds of problems since he has been on the thing including a few trips to the psych ward. Why did you have your pump removed a year ago

[S. Becker]

This is truly an incredible device. It amazes me that today we have technology that we can implant in our bodies that can just stay in there all the time, without causing a bunch of problems.
Makes me think, if a cyborg is a human-robot mix, then does that make somebody who has an artificial electronic/mechanical device such as a Baclofen pump a cyborg?
I knew this day would come.

[hv1987]

I take 60 mg baclofen a day. Is that a lot? I have spasms for sure but i get real stiff in the afternoons when I am working? dont have them at night that I know of as I never wake up from my legs going crazy that I know of. Wondering if a pump would help?

[thehipcrip]

@hv, it's worth having a conversation with your doctor about switching over to the pump. My understanding is that the maximum daily dose of oral baclofen is 80mg, so s/he may want you to see if increasing your dose by 20mg a day, with the extra 20 taken in the afternoon when the spasticity [stiffness] is the worst, before considering the pump.

[SCI-Nurse]

Many people take more than the recommended maximum dose of oral baclofen of 80 mg. daily. Keep in mind that meds for spasticity help much more with TONE (spasticity) than they do with SPASMS (involuntary movement).

I doubt you would qualify for a baclofen pump if you have not been on record as maxing out on not only baclofen, but the other available drugs for spasticity management, including tizandine (Zanaflex) and possibly Dantrium (dantrolene sodium) as well.

(KLD)

[becky34]

I cannot take oral baclofen in doses higher than 20mg at a time without being extremely tired and lethargic. I got the pump in April 2010 after a severe relapse that left me with major spasticity and unable to walk. The pump was a good solution for me because I have a low tolerance for pain meds. It has made a wonderful difference for me.
I have had no problems with the medication in the pump. I am at a very low dosage and have had to have my doctor make 3 adjustments to the amount of baclofen released due to increased spasticity. I have had the pump refilled 2 times. Refill process is extremely easy. Done in the doctor’s office and the appointment takes all of 15 mins.

[stephc10]

I had the baclofen pump implanted last year and the catheter broke by the end of the year. Just had surgery again last week to fix it after months of telling the doctors something was wrong. I don't do any crazy exercises and am ambulatory with a cane due to spasticity. They say I can resume my normal activities but now I'm terrified this will break again. I just wondered if anyone has had similar problems. I really don't want to keep repeating this surgery and I am excited to actually get results. I am now just terrified of moving a certain way and breaking the catheter again.

[zevobru]

My son had a baclofen pump for ten years and never a problem with the catheter. But he had a problem we believe was caused by the pump....but we believe it was from a bad battery. Medtroncs has a recall on the pumps for this issue, but we didn't know that. Either did our doctor. We didn't know the signs of baclofen withdrawal and he was helluncinating, so he couldn't tell the doctors in the emergency roonm what was going on. I would suggest that someone close knows about the signs of Baclofen withdrawal and what should be done if something goes wrong.

[Laura P.]

I had the baclofen pump implanted last year and the catheter broke by the end of the year. Just had surgery again last week to fix it after months of telling the doctors something was wrong. I don't do any crazy exercises and am ambulatory with a cane due to spasticity. They say I can resume my normal activities but now I'm terrified this will break again. I just wondered if anyone has had similar problems. I really don't want to keep repeating this surgery and I am excited to actually get results. I am now just terrified of moving a certain way and breaking the catheter again.
Steph,
I had the same problem. My first surgery for implantation of the baclofen pump was Dec. 21 20111. For a short time, I could see a light at the end of the tunnel: tone decreasing, spasticity pain decreasing, just about ready to ditch my walker. Unfortunately, all of my improvements went away, and, after about a month of trying to convince my pump team that something was wrong, it was discovered that the tubing wasn't patent.
I just had a complete revision of the pump, tubing, etc. They also moved the pump a bit more towards my belly button, as the pump had been hitting my hip bone.
The surgeon told me that she had no idea why the tubing wasn't delivering the medication to my spine, as there was no leakage or holes, and no clots or occlusions.
So, like you, I am scared to death of this happening again.
I have MS, with all of my lesions in my c-spine. Still, I had been very active,and worked out quite a bit.
The spasticity management nurse says I will have no physical restrictions once the pump is scarred in, but I will always wonder if I did something wrong the first time around.
My physical therapist, knowing how hard I work out, will not let me get back to full exercising for 6-8 weeks post surgery, but the pump team thinks I could start 2 weeks after the surgery. (I can barely move my legs, as the pump needs adjusting upward!)
I wish I had answers for you, but all I can do is completely relate to what you are going through.

[Dot99lr]

I don't have a spinal cord injury but I suffered a brain stem stroke in August 2010. This forum has answered a lot of my questions regarding the pump. I had the pump since November 2011. I haven't gotten much relief from it, and I'm up to 615 mcg. I had a dye study done last month, but everything was ok.

I would like to get other peoples experience with it. Do you get progressively looser or does it happen all at once? I'm just getting nervous about it.

Thanks

[zevobru]

When my son first went on the pump, the relief was immediate. Although he lost some strength, his spasticity was reduced along with the pain in his calves. The dosage had to be periodically increased over time. Everyone is different, and he developed psych problems after he went on the pump. His psychatrist said it was related to the interaction of baclofen with other meds.

[Laura P.]

Dot,
I am definitely "looser", but still hypertonic. My second pump was placed one month ago. The pump team that I have been seeing weekly, are fearful of getting me weak, but I am far from weak, and just wish they'd crank that pump dosage up to the point of weakness, and then back off. Prior to the pump, I used a walker for longer distances, but now I am so tight that I use the walker even in the house now.
I must say that my spastic paraspinals and hip flexors have relaxed enough that I am no longer in constant pain....a huge plus.
I have multiple sclerosis, so I am on a much lower dosage than you (120mcg right now, actually,kind of high for someone with MS.)
So, with my experience, I am very slowly getting looser.
Best of luck.

[zevobru]

Today is the 1 year anniversity of my sons "event"...we think the baclofen pump malfunctioned sending him into a coma which last for months. Today, he is still in rehab from the event. During the last year, he was weaned off baclofen...down from 350 to zero in January. The withdrawal was HORRIFIC. So I would make certain you have someone always around if you decide to get off the stuff. Good news is that he is doing considerablly better than when he was on baclofen. He lost weight and is stronger so he can exercise and stretch to combat the spasicity. The nightmare of the last year may turn into a beautiful dream if he continues improving and gets back to where he was before he "discovered" baclofen.

[Slara]

Myths/Facts


MYTH: A test dose of baclofen into the spinal fluid is a good test of how a person’s spasticity would be changed if a baclofen pump were inserted .

FACT: The test dose is given to answer one question: does it relieve spasticity. The test dose often produces more relaxation than would be desired day after day.
MYTH: A baclofen pump improves spasticity in the legs but not in the arms.

FACT: The amount of spasticity reduction in the arms depends on where the catheter is positioned in the spinal fluid. When baclofen was first given, catheters were placed low (T10-12) and improved mainly the legs; now, catheters are positioned higher (e.g., T 1-2) and arm spasticity is improved much more .


Follow-up
The pump needs to be refilled every two to six months, depending on the pump size, concentration and dose. Refills are done in the office (or occasionally by visiting crna nurses) using a syringe and needle and take approximately fifteen minutes to complete. At that time, baclofen doses are adjusted depending on the effects that are being seen. Doses typically increase slowly during the first year, then remain at that level for years thereafter. The battery in the pump lasts seven to eight years at which time the pump needs to be replaced. Baclofen has been used for more than fifteen years with no long-term complications being reported.
Futher Reading: http://www.neurosurgery.pitt.edu/pediatric/spasticity/baclofen_spasticity.html

[SCI-Nurse]

Not true- the test dose is a test dose ( but it is a bolus- injection of 50 mcg to 100 mcg so you can see the effect fast. Once the pump is implanted it is a basal rate or hourly to begin with and the pump is titrated slowly upwards 10-30% at a time. You do NOT want to overdose the person- it is not just your legs- the medicine circulates to the brain and usually doesn't affect much above the lower extremities but if it was an overdose then you could have serious side effects. The titration can be done every other day at the earliest to see the effect of the dose.Then once the desired effect is there you stop and/or you can tweak periodically. There is also a Flex confusion that you can individualize it ex: increase during night or whatever hours are needed or give a bolus- amount at certain times to help when needed and then have the basal or hourly rate also.
Every person is different and pump settings are different and you have to deal with people who know what they are doing or you will get overdosed and go into a coma or the catheter won't be put in correctly or will break loose or leak. If there was a pump malfunction- there is a history or LOG that can be read. An investigation is done by theprovider and also Medtronic or pump company. If this wasn't done then it was the providers fault. You should ask for a read out of your settings and also a log if there were every any complications. Compare the settings and dosage and see what happened. The company will take the pump and test it also!
Not to say the pump can't malfunction but.... operator or implantation error or post op issues- i.e. moving. bending, lifting etc.. when you should NOT bend forward, liftor twist sideways for 6-8 weeks- if you do the possibility of the catheter disloging etc is there. Then you wil get a free flow of medicine. of course this won't show up on the pump log. Most just implant send home and don't give specific enough instructions.

CWO

[MSspouse]

What is the latest on Medicare coverage? My wife finally got the referrals to see a surgeon and we had the visit, but all we heard was a vague $8K copay with no details in a phone message. Nothing about continuing copays for refills. We don't even know if it will work. I'd consider the trial just to know if it's even worth considering. We wasted a $600 copay on botox to find out that was worthless. I tried calling back to get a detailed statement but all I got was runaround. I don't really think they want to do it. I'd look for another surgeon but I don't want to waste time if they are going to tell us the same.

[zevobru]

My son had problems with Baclofen. We still don't know the long-term impact. Many physicial therapists we talked with say there are many others who have had problems with the drug.

[SCI-Nurse]

It is an approved procedure and your INSURANCE COMPANY OR MEDICARE WILL PAY. Again depends on your cpverage. Who is your insurance case manager? You may need to have letters or justification written.You can contct medtronic and they can give you providers in your area that perform the trials/implant and manage itb pumps.And know about the funding issues and rules. www.medtronic.com (http://www.medtronic.com)
CWO
CWO

[MSspouse]

...Again depends on your cpverage. Who is your insurance case manager? ...
As stated, just straight Medicare part A & B. I've never heard of a case manager for Medicare. Probably not a bad idea to go straight to Medtronic but I would think there is a standard cost allowed for this procedure from which the Medicare copay/deductible can be calculated.

[sjean423]

I'd consider the trial just to know if it's even worth considering.

I don't think you could even get a pump put in without the trial, so that is the place to start anyway. See if they would cover that part, and go on from there if it is effective.

[zevobru]

Before having a baclofen pump put in, I would suggest reviewing the potential side-effects of baclofen with the doctor. My son had many problems which his psychiatrist attributed to baclofen. Also talk with your physical therapist and ask if any of their patients had side-effects. Then you can balance the benefit and risks.

[quad79]

I just got my pump a few months ago & so far life is so much better! No interference with driving, sleeping, getting dressed...the list goes on.

I was taking 90mg oral & it wasn't getting many anywhere, just feeding my bodies addiction to it.

I was very surprised that the process took so long. Mr dr. sends every patient to the psychologist for testing. The do this to make sure you have realistic expectation, aren't bi-polar or schitzophrenic, or have a possible drug habit. Then there was the trial. Then the surgery. To my amazement, I was awake the entire 2hrs. under general anesthesia & a spinal block. I went home just hours later too!

It's alot to consider but if you're @ the end of your rope like I was, go for it.

[MSspouse]

So I finally called Medtronic but wasn't able to get any average cost data. After pressing the customer service rep for a way to at least research the drug refill on insurance formularies, I did learn that the form of the drug is called Intrathecal. Should have guessed that, but then again the consumer should not have to do this kind of research to get an estimate. Ironically, a few web searches including the term Intrathecal lead me to the professional section of the Medtronic web site where I found links to coding and 2012 Medicare national average prices.
http://professional.medtronic.com/pt/neuro/itb/rm-pm/coding-coverage/index.htm#.UHY7ixx7NZ0
The prices vary greatly depending on where it is performed. Even a trial could as much as $2000 in Medicare deductible/copay if performed inpatient. We will definitely need to find Surgeon willing to do a trial outpatient or a surgery center.

[quad79]

Definitely push for an outpatient trial!

My trial was done impatient yet my actual surgery was done outpatient! I saw no reason to stay overnight after the trial anyways once my reaction was noted, especially when I was pushed out the door within five hours of having something permanently shoved in my spinal cord..wth?

Good luck!

[zevobru]

Hope the pump works out for you Quad79. Just a note that my son started out the same way. After about 6 months he became depressed was put on anti-depressents..starting a downward spiral in hsi life over the next ten years. It could be just him, but thought you might want to know what to look out for.

[Evonne]

I just got my pump a few months ago & so far life is so much better! No interference with driving, sleeping, getting dressed...the list goes on.


Hey girl,

Glad to see all is well with the pump. I hope you continue to do well with it. Good luck

Evonne

[Wills77]

I've been considering one lately and my doctor is sending me some information on them. Just dreading the look of the pump haha.
Right now I'm on 80mg of baclofen a day and 2mg of valium before bed. I'm prescribed 4 valiums a day as needed for spasms but they make me way too tired to even function so I only take that one before bed.
After I do my FES bike and my legs are loose it makes everything soo much easier.

[TINAMARIE]

So I finally called Medtronic but wasn't able to get any average cost data. After pressing the customer service rep for a way to at least research the drug refill on insurance formularies, I did learn that the form of the drug is called Intrathecal. Should have guessed that, but then again the consumer should not have to do this kind of research to get an estimate. Ironically, a few web searches including the term Intrathecal lead me to the professional section of the Medtronic web site where I found links to coding and 2012 Medicare national average prices.
http://professional.medtronic.com/pt/neuro/itb/rm-pm/coding-coverage/index.htm#.UHY7ixx7NZ0
The prices vary greatly depending on where it is performed. Even a trial could as much as $2000 in Medicare deductible/copay if performed inpatient. We will definitely need to find Surgeon willing to do a trial outpatient or a surgery center.

If you are looking for the cost of a baclofen pump refill, mine was $2288.00 NOT including the doctor's fees. I have a copy of a bill from University of Michigan right here in front of me and it reads like this:


Refill/Maintain Implant Pump - $ 306
Electronic Anal Pump W/Repr $ 517
Lidocaine 2% 20ml Inj $ 9
Baclof 10mg/20ml Kit IT Inj (qty of 2) $1,456

[rybread]

I got my baclofen pump replaced last week. So far so good, no infections yet. This is my fourth one. We didn't have to change the catheter so all is well. Hopefully I stay infection free since I didn't have time to catheter chains and I have no dressing on my back.

[allenstevens]

Does anyone have a pic of what the pump looks like under the skin? just curious

[MSspouse]

If you are looking for the cost of a baclofen pump refill, mine was $2288.00 NOT including the doctor's fees. I have a copy of a bill from University of Michigan right here in front of me and it reads like this:


Refill/Maintain Implant Pump - $ 306
Electronic Anal Pump W/Repr $ 517
Lidocaine 2% 20ml Inj $ 9
Baclof 10mg/20ml Kit IT Inj (qty of 2) $1,456

Thanks for the info. Is that what is billed to Medicare/Insurance? I'm curious what is actually paid by Medicare and what copay category (e.g. 20% copay) it falls under.
I called the Physiatrist office and she was helpful but not very definitive. She seemed to think it would be about $180 copay with Medicare. That's not so bad. We can handle low hundreds, but not thousands every year.

[new dimension]

Well the trial went well other then a horrendous spinal headache andi lightheadedness. Is that typical and can we expect the same when the pump is implanted?

[McDuff]

That is typical for the test run, large amount of spinal fluid replacement doesn't play well with the head. The pump outputs a much smaller and constant amount of med, and there is no fluid withdrawal, so the "headache bounce" should not happen. At least did not for me.

[Axle]

Thanks for the info. Is that what is billed to Medicare/Insurance? I'm curious what is actually paid by Medicare and what copay category (e.g. 20% copay) it falls under.
I called the Physiatrist office and she was helpful but not very definitive. She seemed to think it would be about $180 copay with Medicare. That's not so bad. We can handle low hundreds, but not thousands every year.

Depending on what they do (refill or adjustment) your 20% copay may be approximately $30 to $50 as an original Medicare patient.

[new dimension]

Looking for those you have a pump and their thoughts on if it has been worth it? How has it improved your quality of life? How it actually looks under the skin? Who have had problems with procedure and/or after? How long have you had the pump and what level of injury do you have?
Scheduled for March 5th and as always worried?

[PN]

I am moving this thread to our Care Forum. I decided against getting the pump because I was concerned about potential malfunctions.

[vjls]

Looking for those you have a pump and their thoughts on if it has been worth it? How has it improved your quality of life? How it actually looks under the skin? Who have had problems with procedure and/or after? How long have you had the pump and what level of injury do you have?
Scheduled for March 5th and as always worried?

some like it i did to for awhile then it got a kink in catherea but they did not find for 3 yrs
it almost killed me

if if it had stayed working heaven yes but now i am to scared but it was great

if that makes sense

[Kevin Giblin]

I think the pump implant is sort of like a knee or hip replacement. Nobody really wants to have it done unless ones condition becomes so unbearable that you can't live with out it. For me, my muscle spasms got so intense that it was affecting many areas of my quality of life. For example, I couldn't allow my body to fully extend - like laying flat in bed, because my back & leg muscle would contract so intensely that it would cause serious AD--autonomic dysreflexia, so always had to keep in fetal position. Had to devise all kinds of restraint systems & had exceeded safe limits on oral spasm medication. I really reached a point where I thought I just could not go on. The pump dramatically changed all that for me. I am now 7 years post implant & am a few months away from having another replacement pump installed since my battery life is about up on my 1st unit. Yes, there is the possibility that something can go wrong with the pump so you have to look at the present data including the best places to get it done. My was installed at Stanford Medical by Jamie Henderson & I would have it refilled every 6 months....

[zagam]

They need to be monitored as though it provides relief you develop both resistance and dependence. If it fails to deliver for any reason then this can be a medical emergency (hyperthermia and rhabdomyolysis). Delivering it to where its needed though is better tolerated.

http://blogs.gnome.org/gnomg/2012/01/
http://www.youtube.com/watch?v=5XDTQLa3NjE
(http://www.youtube.com/watch?v=5XDTQLa3NjE) (Sorry can only find youtube which I can't play.)
http://www.techrepublic.com/blog/australia/linuxconfau-2012-cyborg-lawyer-demands-source/577
http://media.cnetnetworks.com.au/audio/musiccentre/techrepublic/techrepublic-lca2012-ep3-01.mp3
(Audio content is in a plain URL.)

I get funny spaz that's painful so I manage with painkillers. Some times I go beetroot colour or blotchy and sweat including headache, etc. Some times removing clothing and ice, water or both is enough. Painkillers work, but they take time.

Low SCI should not get AD, so bad elsewhere, something else or am I a defective cyborg too?

I was on all sorts of nasties for pain from pain specialist. Now opioid does it and need has not increased.

[Axle]

I really reached a point where I thought I just could not go on. The pump dramatically changed all that for me.

What dosage and how long did it take to find the right dosage? Turning it up too much too quickly leaves me sleepy for weeks.

[rybread]

Those of you wondering if it improves your quality of life, I couldn't live without it. My spasms before I got it or so bad that whenever I would hit a bump my body would straighten out and outside down in my chair. If I got rubbed in my legs or just moved just right my legs would kick up out of the chair. Sometimes lifting my arms to push would even cause spasms. They would hit my obliques (muscles on the sides of my abdomen) and pull me over to the point where I couldn't get back up. Six years ago, after a replacement, the replacement site got infected and I had to have the pump removed for a month. My spasms were so bad I physically couldn't get out of bed without spasming so hard it would knock me out of my sling or I would hurt a caregiver. I stayed in the hospital after it was removed because of that plus the withdrawal from baclofen, which gave me crazy hallucinations. If you're taking over 80 mg of baclofen a day you're taking too much. Another great thing about the pump I've noticed is I get a little bibucaine put in it to help bring down my central pain. I notice a big difference whenever I lower my dosage. I posted pictures on here of what it looks like. They typically put it on the side of your abdomen and it sticks out about an inch. Don't let that discourage you from getting it. Trust me, it's worth It If you can't get your spasms or pain to a safe level. Have them do a test dosage to see how you like it. It's fully adjustable and can be set up did you boluses at certain times of the day when you're spasms are the worst. I get most of my dosage through boluses and I also have a continuous stream being pumped.

[SCI-Nurse]

The restrictions after implantation are no lifing, bending, twisting for 6 weeks, especially the first three weeks. Get help with transfers and care so you don't have to do this. If you do this then your pump and tubing will be fine. Increases (titrating) can be done every other day or every day till you get to eh right dose and then you can have adjustments specifcs to your needs i.e. if you need more during the night etc...
You will be given refill apointments before the reservoir gets low and the pump alarms.
CWO

[new dimension]

Yesterday was the day...had some what I think are typical hiccups, delays, some AD after from bladder fullness as it was relieved quickly with cathing. Tough night in the hospital fighting, over heating and the.chills from one moment to the next. The relief from spasms is unbelievable...they are gone from the lower torso. Very hard to believe after 5 years of spasms that I had to fight with all my.might as a care taker making even. daily tasks a challenge and dangerous. So far no spinal headache thank God! Praying.for life changing results....although we tried to use the spasms in positive ways towards recovery we were truely beaten down. Praying the benefits outway the risks!

[bollefen]

I have posts on the pain board as well, but this is best here. How much do you get billed for a baclofen pump refill and how does your insurance comapny cover it? % wise, Max payment per year wise? and finally if you each your max out of pocket do you still have a drug co-pay?

I can't live without it and the costs are staggering, trying to sort through this with my insurance company and it was recently complicated by adding Prialt to the mix.

I just got a bill for $2255.54 (after the insurance benefit) and assumed it was the Prialt blah blah anyway I misread the bill and that was for the refill before they added Prialt so that is a straight baclofen refill.

this is getting very scary $$$$ wise. Can't live without and can't afford to pay for it?? How are you paying for it.

I'd like a bit more info before I call the insurance company again but already have my next refill scheduled.

help

ket

[taziar]

I have posts on the pain board as well, but this is best here. How much do you get billed for a baclofen pump refill and how does your insurance comapny cover it? % wise, Max payment per year wise? and finally if you each your max out of pocket do you still have a drug co-pay?

I can't live without it and the costs are staggering, trying to sort through this with my insurance company and it was recently complicated by adding Prialt to the mix.

I just got a bill for $2255.54 (after the insurance benefit) and assumed it was the Prialt blah blah anyway I misread the bill and that was for the refill before they added Prialt so that is a straight baclofen refill.

this is getting very scary $$$$ wise. Can't live without and can't afford to pay for it?? How are you paying for it.

I'd like a bit more info before I call the insurance company again but already have my next refill scheduled.

help

ket

I just got a pump implanted last week, so I don't know exactly how the billing will shake itself out. However, I did deal a bit with the pharmacy involved when I had the ITB test done. For that bolus dose, my insurance company got a claim from the pharmacy like $300 total. The insurance company covered 60%, but the pharmacy forgave the entire patient balance. I talked to them directly and they indicated without stating it directly, that they worked very hard to make sure they made profit off the insurance company and then tried not to go after the patient for anything. I don't know what I'll do if they try to screw me, but with the pump working now for just over 1 week, there's no way I'm letting them take it away. It's an absolute game changer for my quality of life.

Good luck!